PatientC Manifest

Welcome to me: the me before I even get up, the base physical me, the challenges in my day, and what I conquer, compromise, and coddle to get to you, Dear Reader.

There is the whole lupus/SLE thing. Because of two disagreeing rheumatologists, I am not currently on Plaquenil, which did help somewhat. This mess brought to you by a gutless GP (now out of the country, I think) that refused to override one of the two rheumys. This has been a cluster fuck since it started and I am just not surprised by crap like this anymore. We are treating some of the pain brought on by lupus, and I go take steroids during flares. Note: this should get taken more seriously now that my brother has been affirmatively diagnosed with lupus/SLE as well.

The fibromyalgia thing came along later, and I take an anti-seizure med to calm down the fibro spots and the electric pain that runs up and down my back (I envision my spine & back as being a big Tesla coil type thing when this pain is uncontrolled.)

These two alone can cause brain fog/cognitive dysfunction, fatigue, loss of memory, boatloads of pain, et al. They, and some of the following, are exclusionary diagnosis, which is a hell no on should ever suffer.

Even later came the irritable bowel syndrome/IBS thing. This is even more of a social life killer than the other two. While all three can have flares (and sometimes set each other off, what fun!), IBS flares usually keep me within ten feet of an accessible bathroom. So it is also horribly life changing but one of the more difficult things to talk about. USians are so weird about bathroom habits, we do not even have the language to discuss this well. I take an anti-spasmodic for this, to keep my guts from churning too fast.

In between the last two we found carpal tunnel syndrome. I had open carpal tunnel surgery last year, and while recovery was difficult (the family made it much easier than it could have been for me), the recovery from it was complete. Since then it has gotten worse in my left hand, and we found ulnar entrapment in both my hands. As this stuff progresses, I will need to get opened up again.

About five years ago we found bulging/herniated disks in my back. These have now gotten worse and I just found out that there is now spinal stenosis and arthritis happening in my spine. I have started using a TENS unit to manage that pain. It works, but since it does not do anything for the problem causing the pain, it comes back after use: a day or two if I am taking it easy, later that day if I am trying to get stuff done. Next week I will have steroids injected into my spine to try to manage this more effectively and help with the hyper-mobility and hypo-mobility that seem to be associated with the diagnosed problems (hopefully they are not new ones!).

All of that mess means that I take both pain meds and a muscle relaxer. They help, they do. No day is pain free - no day will likely ever be pain free. That is not even the goal anymore. This past year I have put on some weight. Moving hurt, I started moving less. When I moved less, I burned less calories. This situation has actually caused better pain management, so... umm... silver lining? Not really, but I am glad to do something about it.

Some genius decided I was depressed. While depression is often a valid diagnosis, I still argue that I am angry, grieving, in constant physical pain, downright sad... I still view depression as unreasonable sadness, morose without source. I am taking an mild anti-depressant anyhow, because if you do not, then they see you as "non compliant" and that greatly changes how every doctor sees you and treats you. Until they have little time capsules you can swallow and go back and make good diagnosis early, this will probably remain a problem of various intensity.

I am also avoidant, which combined with the lupus/fibro/IBS means that stupid social bullshit literally makes me sick. Stress can throw me into Flaresville if managed badly or unmanageable. I resent the hell out of that, but my resentment does not, can not make it any less true. I internally debate if it is ableist to get shitty with me for protecting my own mental health in cases of social stupidity. Take that definition with a grain of salt, though - it is not as rare as you might think to be a avoidant public personality. **cough** I could explain that, but I feel like I already screwed up telling some folks that I am avoidant in the first place. I have a med to take when I am getting too stressed, although it has a sedating quality, so I try to avoid it.

I think I am almost done.

I have been hypoglycemic for two decades, controlled through diet. 

I have a handful of allergies that make medical life difficult. One of them causes anaphylactic shock and can cause death all by itself. 

I take vitamins, but have to take Vitamin D3 for a deficiency and I take a separate calcium supplement to help guard against the years of steroids I will have taken should I be lucky enough to grow old. 

I have an unexplained spot on cranial MRIs that we stopped monitoring after four or so years of watching it.

I had a full (minus one ovary) hysterectomy due to ovarian cysts and unmanageable chronic primary dysmenorrhea (super awful menstrual syndrome). We did not know I likely had an illness that, when treated, could have made this more manageable. 

I had my tonsils removed as an adult, because we did not understand why I was getting step/not strep six times a year. We did not know I likely had an illness that, when treated, could have made this more manageable. Again.

I used to have a handful of kidney/UTI trouble. I almost lost a kidney in grade
school because I did not run the fever they expected and so no one treated me. My low body temp/fevers plagues me even still. 

Oh, and there is the TMJ thing, which I only notice when it is really bad. Couple that with really soft teeth, a really dry, small mouth, and you have a recipie for disaster. Anyone that tells you that dental insurance is not as necessary as health coverage is lying through their... whatever. On the up side, my dentist is all kinds of awesome. He makes sure that everyone in the office clinic treats all of us patients like we have cadillac plans. They are amazing. Which is good, because whenever I can use a dentist, I go to the dentist. Senator Bernie Sanders is the only person with visibility talking about the dental catastrophe that is happening in the US and working to help it.

And the migraines. Wow, the migraines sometimes...

Welcome to my body. This is all before I get out of bed every day. Make no mistake: this is not a litany of woes. Well, maybe it is, but you do not see a single "poor me" or anything like that. This post is not a complaint, it is just what I deal with every damn day.

(Wow, that was longer than I thought it would be. One day, maybe, I will go ahead and tell you how I got here, to you, Dear Reader.)  

Sharing

I love to write. I love to read. 

These have been true for all of my life that I can recall. When that was taking away from me for a while because of The Incident, I was inconsolable. I was inconsolable about a lot of my losses, but the names of my loved ones and reading and writing were the top of that list. Buttons, shmuttons. I have clawed a lot of that back, and I am both proud and grateful for all the help that my loved ones offered (and offer, they rock).

I really dig blogging. Hell, I have left a LJ path behind me that has at times been huge. I dig reading blogs, looking into you as you do into me.

Every time I pick up blogging again, it is for a reason. And I find as that reason passes or I have done what I can with or about it - I start to write really personal things about living my life.

Those get left in the draft folder and or deleted - although every once in awhile I will share one. And you respond by reading it a lot. Which is great.

It also happens to scare me to death. 

That article on wheelchair etiquette is born of a thousand indignities suffered by me and other people. I try to imagine the folks that visit it, and I think it appeals more to folks in chairs that need a release than maybe it does to the able-bodied. The sharing of those indignities, in my particular way, seems to have helped some some bodies out there. I think I want to do more of that.

I have been hesitant  though, most of the time, to really peal the skin off and show you, J.D. Ballard style, the workings and brokenness underneath.

I think this has to change. I have decided to write. To be. To share. To be more vulnerable. Maybe to YouTube. 

To dare to do enough to risk being wrong. In front of you.

I am not so much inspired as I am tired of the shell I have insisted on living in for my own protection. I am a big girl and I can handle getting hurt. Hell, pain has never really been the deterrent for me that it is for most folks. I am not coming out all Bob Flanagan, but something closer to that than where I am now.

Struggle Days

Lately, I have more struggle days than not. A struggle day is when some symptom, some part of something out of my control makes the day harder than it should be. Sometimes it feels like a victory to see the end of one day and the beginning of another. Now, I do believe that in general, but I rarely actively feel it.

One rabbit hole that has made this last set of struggle days better is the Green Brothers. Crash Course, Vlogbrothers, all of their efforts. They are amazing. I recommend pretty much everything they do as far as I can tell. I knew John Green was on my computer before, and I could not remember why until I saw him talk about being on PotUS's first G+ hangout.

Another was Yo Is This Racist, which you can enjoy here. 

The Buddhism thing is moving along at a pace. What is helpful is that so far there has been nothing I have learned that has contested my own standards of honesty, compassion  and trust - while I do not always meet those as I would like, there they are just the same. The Boyfriend and I went to a weekend local event and it went well. I had a crushing moment of vulnerability and moved through and with it rather than pretending it was not happening, or taking it completely private.

I am trying to live more honestly, which brings up the vulnerability thing again, which I am experiencing quite a lot of lately (even if I need spell check to tell you that!). That means shedding the facade of not being in chronic pain. This is awkward, because good people are made uncomfortable by people in pain - they want to fix it for you, bless 'em. And they just cannot, which makes them feel bad. Now, I do not mean griping about it all the time, I just mean being honest when something hurts a lot, not hiding the signs of pain as they happen, and just going with whatever I can do every day: if it is just to get my ass dressed and sit and be with folks, or head downstairs and do some crafting or minor sewing (I love making actual things that can be held or given.)

So here I am. I hope you have been well.

Opiate Crackdown... Again.

So the New York Times has written about the newest opiate prescription crackdown. This will come as no surprise, but a deep burden, to pain patients everywhere. Like life with the kind of pain that gets opiate attention is not already hard enough.


I know that my life is not indicative of all lives, and that my experience is not universal. But it is already hard enough, dammit. I already have to schedule, attend, and pay for doc visits I do not need (as opposed to the many I do need) in order to "check in" on my pain script. I have already mentioned several times that it is no longer cutting it, and we are going to have to find something better that still leaves some upward mobility in this area for the rest of my life.


That is part of what I mean when I say it is already more difficult than it should be. I have to plan to be in pain for the rest of my life. Imagine that, if it is not your life:  you can never, ever have a pain free day. Not once can you ever go to sleep thinking that tomorrow will be better. That maybe, one day, you will find a way to not actively suffer throughout your day.


Just think about that for a minute.


So, your pain is incurable, but "manageable" through drugs. Opiates. And at every turn, it feels like someone is trying to remove the one thing that makes your daily activities possible. That allows you to not spend your day curled up in a ball, in tears, on the bed you rarely leave now.


Also: no one believes you. No one truly has a hint of a clue as to what life is like in your chronic pain body. And they simply cannot fathom the amount of pain one human being can feel and still be here, still be trying to function, still be trying to make some thing of their life. And they cannot imagine that one may need an evil, addictive opiate to manage. They do not understand the difference between addiction and dependence. Hell, a lot of detox programs do not understand that difference.


So sure, they may catch some people abusing the system. And some doctors may, from what was in the article, find some other, maybe even more effective treatments for a few. But what this really means is that a lot of law abiding patients are going to be in a lot more pain in the name of... Hell, I am not even sure. It will not matter to those patients. It does not matter to me. I just want someone to have an idea of the hell that some people are going go through in the name of it.

Dear Bill Maher

Dear Bill Maher:


Fuck you.


Wait, perhaps I should explain. On your HBO series, Real Time with Bill Maher, episode 238, after your opening monologue, you conducted an interview with Dr. Drew Pinsky.


For the most part, it was the standard off-and-on funny middling self-help celebrity interview. I had some hope that this would be good stuff when Pinsky called "bullshit" right away on some of the standard thought processes regarding celebrities and addition. Even better, when you both touched on how street drugs seem to, regarding addition in general, have different, less fatal outcomes than prescription drug addition. This is not part of current common wisdom and needs more discussion and scrutiny. I thought it was useful that you two delved into why celebrity addiction deaths seem to follow a pattern regarding "downers." It was really poignant when you two mentioned that sleep is the one thing that no one, no matter what their wealth and status, can order up on demand (particularly once one has built up a resistance to  Benzodiazepines , etc...).


But you and Dr. Pinsky talked a bit about painkillers, and you went so far off the rails you crashed the train in to the station. You quoted a statistic stating that while USians are a small percent of the world population, we use 56 percent of the painkillers and asked "What is it about Americans that we cannot cope with pain?" 


Deep breath, here we go...


So just starting out you make a gross generalization (and I do mean gross) and make me wonder what the hell is wrong with you. You give that statistic without citation, and with a number of assumptions. Have you even thought about what may be contributing to that statistic? That perhaps, with our extended lifespans that people are living longer in bodies that become more and more prone to conditions that cause pain? That there are numerous conditions out there that can not be cured, used to be fatal, but now are at least partially manageable and that one of the things that needs to be managed is often pain?


What is really important here is that you are feeding a stereotype of Americans using painkillers that itself can be deadly. Chronic pain is a vicious thing that uncoils into every aspect of your life, poisoning it. It does not just harm, it kills. Chronic pain kills enjoyment. Chronic pain kills serenity. Chronic pain kills relationships. Chronic pain kills self esteem and self reliance. Chronic pain drives people to suicide.


Do you have any idea how many people I hear from that live their lives in more pain than necessary, not out of deprivation but because of the stigma of pain killers? It is all I can do to not stop right now and sob just at the thought of the needless pain that I personally know is out there this morning. I am now, right now, needlessly suffering because my current pain killer and dose is no longer effective, but I just do not want to wrestle with my health care network. I just do not have the mental and emotional stamina to face being treated like a criminal because I have the misfortune to have a body that hurts.


Mr. Maher, please quit feeding the stereotype. There is genuine suffering out there, in here, that should not exist. If nothing else, in this modern age, we ought to be able to alleviate suffering. Our willingness to do so is part of our measure as human beings. 


I will toast you, Mr. Maher, the next time I take my nearly criminalized, carefully measured and monitored, and now rapidly approaching useless pain killer dose. If you cannot speak of those in pain or chronic pain with some humanity, compassion, and education, then please do not speak of us at all.


Edit: spelling error, 2/26/12

A Day Without

I was not going to write today. Today is a day without. If you are on any kind of regular medication, you know what that means. If you are on pain medication, you know exactly what I mean. I am managing: keeping as busy as I can, my mind as off of it as is possible, and simply riding it out when those fail. 


We filed taxes today, which meant talking to a stranger about being officially disabled. And of course, because I look the way I do, I get the look - of just enough socially acceptable disbelief without out and out accusing me of fraud. And I just sat there, paralyzed by all the available options of anger and ranting and pontificating stretching out before me, knowing I could touch none of them if I wanted my taxes done today. And the moment passed as quickly as it came, with no acknowledgement that it had even occurred.


Hell if pain meds are not a double edged sword. Without them, I am more alert, more bright, more capable of feeling. But with that comes not - because the thing I am most alert to, feeling the most, is pain. And not a practical, productive pain - no, a lingering, heavy, valueless pain. We put up with, even court, pain for certain reasons: athletic excellence, child birth, rights of passage. There is pain for good reason.


Chronic pain is a different animal. It eats at your psyche, even when you have it "controlled." Even then, it is a specter waiting to lash out at you the moment you forget to take your meds on schedule or, in this case, go without for a simple, single day. You are, now and forever, at the mercy of any number of factors with infinite ways of going wrong. And they do go wrong. All the time. So the only time you feel truly safe is when you have them in hand, and only until you can see the bottom of the bottle. Then this dance starts all over again: see the doc if it is that time, make sure they still feel you need what you know you need, useless insulting questions about  if you are selling your Rx, then if you get through that it is off to the pharmacy, and it has it's own little dance.


The day moves both far too slow and far too fast. It feels like swimming though rapidly hardening cement that has somehow caught an icy fire. It is an amazing sensation to move through it, but if feels as though if you stop moving you will drown in it all. But everything around you is somehow unaffected by this miasma and keeps running at normal speed... A speed completely inaccessible to you without amounts of pain the world around you could never understand. So you save that capacity for something important, like kids that need to go to the hospital or things like that. Otherwise, you muddle through, catching bits and pieces around you. What was that guy saying? You have no idea - you were trying to figure out if that pain in your back was coming from your kidneys or your sciatica. Because latter is just fucking with you, the former means you should grab your hospital bag.


So today is just a day. Today is one of those days. Tomorrow will be better, all happening as foreseen. But now you have knowledge of one of my days, one of those days. A day without.

Not a Junkie

Thank you to Blurbette and #TeamAfterParty for bringing this simmering topic back to a brain boil.

Days like today find me feeling like a junkie. At least, I think that other people may see it that way. See, the doctor that signs my pain prescription took a long vacation around the holiday, a vaction which happened to include the day my Rx needed to be filled. So, I was, of course, left waiting. I have only rarely experienced any sense of urgency from medical professionals regarding pain treatment.

After years of fighting and enduring, I did finally get my health pros to take my pain seriously. My GP/gateway provider was particularly hesitant. He did decide (eventually!) that my pain is indeed real, and I am not seeking to sell my pills on the street. Even so, my ability to live my day to day life with at least some freedom of pain is not, and has never been, a priority for anyone with a sheepskin.

The difference between opiate dependence and opiate addiction is not obvious to the casual observer. One of the reasons I hate being called an addict is that addiction is a whole different experience, and I do not want to appropriate that experience set as my own when my addictions are mild: caffeine and nicotine.

I am dependent. This means that I require opiates to modulate my pain (it is long past being negated through most anything) and get through even a vaguely normal day. I acquire them through completely legal means, and there has never been any solid inquiry regarding my integrity. By “no solid inquiry” I, of course, mean other than the default suspicion that accompanies using opiates in the first place!

I take a very strong opiate, and still I do not have pain free days.

People dependant on opiates go through withdraw just like addicts do. The difference between dependent and addicted is not a physical one, in my experience, but a moral one. Unless you are willing to break the law and either buy off the street, or doctor shop, or whatever – there is nothing you can do but wait for the duly appointed authority figure in the matter to get off their DAMN ASS and take care of business.

It is not as if I am the one that insists that I need opiates to control my pain. I tried, both through my own suggestion, the suggestions of friends and strangers, and my DEA worried docs’ suggestions just about every non-opiate pain killer out there. I have also, a very few times, drunk myself into a stupor as a last resort escape from consciousness, if not pain. My liver is still not happy about any of that. To be honest, if killing a chicken in the light of the full moon could relieve my pain, I would probably do it. Nothing works but opiates, and I had a truckload of Nancy Reagan to get out of my damn head before I could even begin to be okay with that.

Extreme, unrelenting pain is insane making. No, I am not taking a poke at folks that qualify as insane – I mean that extreme pain can cause symptoms similar to several diagnosable mental illnesses. Pain can lead to shortness of temper, irritability, paranoia, loss of cognitive function, loss of memory, compulsive behavior, self-harm (in my opinion, this is an attempt to set off the CNS’s pain gate function), loss of physical ability, and unpredictable bouts of extreme anger, frustration, guilt, morose, ennui, and pissed-off-ness. Yeah, ahh, those would be, you know, industry terms…

As I write this, I am coming up on missing my first dose. Within a day after that, if it goes that far, I will have extra super flu-like symptoms (lupus is kind of like having the flu all the time anyway), I will hate the whole damn world, and my vocabulary with mainly consist of the kind of language people use when they tell the Aristocrats joke. It is all I can do right now to try to accomplish all the things that will need to be done for a little while in case I need to retreat to my bed, curl up under a blanket I will then play Too Hot Too Cold with, and spit random curses at the world.

There are a lot of side effects I experience that I am not, and will probably not go into here or with much of anyone that does not need to know. And my experience with this may not the same as anyone else’s, let alone everyone else’s.

Oh, and every six months I have to go though a “Do you still really need these pills?” appointment. Look, if I was all better one of the first things I would do is call all the docs that have been humane, recognized my humanity and sing their praises; then call the other docs and describe, in loud detail, what anatomically impossible feats I would like them to perform for me.

***

As of today, the day I post this, everything is fine. If you were kind enough to have a thought about my well being… well, first, bless you heart! Caring about people on the internet! You are an exemplary human being, Gentle Reader. Second, I am okay. This article was written early, in order to make sure I had something to post even if my doc did not get back to me in time to take away my short term ticket to hell. My doc was still gone, but my old doc is in the same office, was in attendance, and she did come through. So I am okay, and no more likely to explode at anyone than I am on any other regular.

To Violently Induce Empathy

I originally wrote this in May, 2010, when I felt particularly injured by people in my life that just were not getting it. I think that acknowledging when I feel like a bitter, embattled bad crip is important. While I was busy drawing analogies, I lost site of how violent this post really is, so you have been warned.

Originally posted elsewhere on May 7, 2010

I needed to get this out of my head.

Some days I am almost fine. I get up early, I get stuff done, maybe I go out, and maybe I fuck. These days are rare.

Some days I am incapable of almost anything. I stay in bed, or turn the couch into my bed, and veg out to news so I do not feel totally disconnected from everything. I do not fuck with anything on these days, nor do I appreciate getting fucked with by anyone. I can barely move, I can barely read, I have almost no recall and can barely follow a conversation. If I am actually trying to do something while like this, then I place a great amount of importance on whatever that may be, and even then I will probably screw it up.

Most days I am somewhere in-between and either blow all my spoons far too early, or end up doing very little "in case" I need my spoons later that day.

Only if I place a great deal of trust in you will I tell you what kind of day today is when you ask "How are you?” I am so tired of being shut down by people that ask how I am but do not really give a damn.

I "pass" most of the time. People do not know I am disabled unless I tell them. Yes, even with the cane -- this is weird to me. So when I go out with the wheelchair it is almost always a gimp circus. People think that since I do not look disabled (whatever the hell that is supposed to mean!), that I must be faking or something. Fates forbid I actually stand up out of my chair for any reason.

I am tired of being a "good cripple."

Don't touch my wheelchair without gaining my permission first. Do not imply it must be nice to "sit around" everywhere. Yes, I can make those jokes, and you can laugh when I do if you want to laugh. Do not explain to me how good I have it, or how bad you feel for me. Just like I do not get to appropriate the experiences of a person with Autism, you do not get to appropriate mine with lupus/SLE and chronic pain (and SI joint dysfunction, and compressed disks, and non-specific brain damage, and...). Do not lecture me about my behavior, my drugs, or my coping mechanisms. Do not excuse places that are not accessible to me, or accessible to the people that society has labeled the same as me.

Do not "congratulate" me when I am not in the chair. I know you mean well, but just stop it. I may be having a good day, or I may be someplace that simply would not accommodate what I actually need that day.

Do not tell me you know "how I feel" unless you really want to. While there would be no complete equivalent, I could give it my best effort...

I cannot fuck with your genes to make your body attack itself, but I can take a baseball bat to your chest, your lower spine, your SI joint. If it is a rainy day or the weather fronts are changing, I will just wail on every joint you have from your knuckles to your toes to your spine. I will wrap your head in batting so tight that the very thought of light in your eyes will make you cry. I will stuff your ears so that you can barely hear, and cannot make sense of the things you do hear -- only later to remove it all and subject you to such noise that you long for the stuffing. I will knock your legs out from under you when you try to walk, move everything so that it is just out of reach, and recite long numbers as you try to remember your address or someone's birthday or phone number.

I will alienate your friends and family, canceling important events without notice or apparent cause. If they will not come see you, then fuck them because that is the only way you will socialize most of the time. I will make you doubt yourself, the people around you, your ability to do or think a damn thing, and then make you feel bad for being angry about your situation. I may let you go out every once in a while, but I will fill that time with so much fear, doubt, and shame that you will wish you stayed home. Your doctors will become your only major contacts outside of your home, and even then I will not always let you go -- and only the really good ones will even listen to you, let alone believe you.

Whatever heaven you believe in help you if you dare shut me down and try to pretend everything is okay. I do not get to do that, so neither do you.

Most folks that will actually read this never have to worry about any of it. You are kind folks that express sympathy without pity, and accommodate without fanfare -- and as you can probably see, that means a lot to me. This just would not leave my head and I needed to rant.

Pain: Attitudes

**Likely to become the first part of a series of articles about multiple posts about pain, pain management, and whatever related issues stay in my head long enough to write about them. I thank you for your indulgence! On another note, this post is rather more stream-of-consciousness that I would like, but I decided non-linear writing was better than none at all. It may take a while before I really find a voice and style for me.**

Pain is a complicated issue. Depending on what you are dealing with, and your own personal tolerances, almost anything can cause pain. It cannot be objectively observed or measured. It is difficult to categorize, although we have tried: intensity, duration, origination, any sense of cause, and various descriptors (shooting, throbbing, stabbing, etc…). What I want to discuss here is attitudes about pain.

Often, before I even mention pain to others, I have to overcome classic attitudes I have internalized, the largest being “is this important enough to bother someone els with it?” followed by “am I being a wimp?” I have found that the fear of wimp-dom keeps many people from talking about their pain at all, or at the very least only to those people that are trusted. If I do not trust you, I will never bring it up at all, or I will bypass a pain related issue by making a weak overall health generalization, if forced (which I hate, thank you very much).

Having discussed this with other people in person, frequent reading about pain issues (particularly involving health care professionals), and my own personal experience, I find one major impediment to the acceptance of a personal declaration of pain. In the US, acknowledging pain is a de facto admission of lack of personal fortitude.*

Pain is pain, and if you have it, you already know that. If you have chronic pain, then you know that there is nothing in your life that it does not touch: emotional health, relationships with others, concepts of self and the ability to function at all to varying degrees. External responses to pain can vary from case to case. If you are screaming in pain with part of your tibia sticking out of your leg, the people around you will have two goals: one is to seek help for you, and the second will be to get you to quiet down. This quieting is multifold; to keep you coherent and avoid shock, and to comfort the unease other people feel at you displaying your pain. If you have chronic, invisible pain, you will likely be dismissed altogether, and experience a very uncomfortable social atmosphere as people (both internally and maybe even externally) wonder if your pain is ‘legitimate.’ If you talk about pain, people often seem uneasy and hurry to change the subject.

USians seem to have a Puritanical view of admitting to feeling pain, or having the audacity to *gasp* complain about it. This admission is seen as a lack of fortitude, or of character. Let me unequivocally state that there is no moral failing in feeling pain, nor in seeking help to alleviate it. None. Nada. Zero. You do not have to take any flak/guff/grief from anyone, including health care professionals, about insisting that you are in pain and need help. With the exception of medical professionals, you should not ever have to prove to anyone that you are experiencing pain. The health care system is more likely to take your pain seriously if they can find an underlying cause. Otherwise, you may be out of luck until they do. Be insistent, and do not let others negate your analysis of your own body and situation. You do not have to justify the use of any pain aid; not OTC analgesics, not opiates, not woo. Whatever works for you works for you, and may you have luck in finding that quickly, with a minimum of backlash.

Chronic pain =/= less of a person.

I have been in chronic pain for over a decade, from various and numerous causes, and have seen these attitudes consistently. So consistently, in fact, that when I do not see them, I tend to ask if the person in question has themselves has experience with (or with someone else with) chronic, unrelenting pain. Only a very few have acquired any sort of understanding without such experience.

I cannot begin to measure how much pain and misery I put myself and by extension, my family, through due to my own unwillingness to acknowledge that I needed help. Then I had to spend months convincing my health network of the truth of this. I think that talking to docs and whatnot about pain will probably be another post.

*I know I am both generalizing and specifying in ways that may be problematic, and I am interested in knowing how this plays out in other areas.